Here’s the risk. People with disabilities face a constant affront on their personal autonomy. Especially any time they are visibly disabled in public, there are the stares that people don’t even try to hide; the comments; the questions, the assholes who get it in their little pea brains to try to convince you that you can’t really be disabled, or not that disabled, or it can’t be that bad anyway; by corollary, the assholes who react as though you were dying in front of them, cooing and fawning and making sad eyes and telling you how sorry they are and how awful it must be; and then the assholes who see “person with disability” and read “person who NEEDS MY HELP!” — having the presumption and gall to take and push your wheelchair, or hold open doors far past the point of creepiness, or forcibly take from your hands whatever you were carrying, or, well, presume to tell you how they think you can “fix” your disability.

The blog you are reading is titled Feministe, so I can assume that most of you consider yourselves feminist, right? You can use that framework to understand a little bit of what it is like to live life with a disability: the “thousand little cuts” that make up one huge painful wound that we are trained from birth not to see.

And face it: as a temporarily abled person, you hold a vast amount of privilege in this culture. So when I tell you that there are so many thingsyou do not see, please do not write me off.

Becausethere are so many things you do not see. You do not know this person’s medical history. You do not know this person’s family history. You do not know this person’s history, full stop, the whole of their experiences as a human being. You do not know what medical conditions this person has. You do not know how many they have and how any of them might interact. You do not know how disabling they are. You do not know how much of a person’s disability is physical and how much mental. You do not know what treatments are available for this person’s condition, and you do not know what treatments are available for this person. You do not know what allergies this person has. You do not know how any given treatment might affect this person mentally or physically. You do not know what therapies this person has already tried, and to what degree of success. You do not know what all this person has to do every day, and what may get in the way of doing those things.

And that’s just the beginning.

There are fairly rigid standards for diagnosing each medical condition, but don’t let that fool you; each individual person with that condition has their own individual life, and the condition takes on an individual form shaped around the outlines of that person’s life. Disability is a very fluid concept, despite popular conception, starting basically when a condition is interfering with your ability to conduct your life. But what is interfering, and what is that life? Again, I cannot emphasize enough, disability is a very fluid concept, taking a specialized form for each person it affects.

All this means that even though your work buddy’s grandma’s friend down the road shares whichever particular medical condition, that does not make your work buddy’s grandma’s friend down the road’s experiences transferable to mine.

Those of us with disabilities have, chances are, dealt with them for years already. We have already taken the time to learn about our condition, to understand how it works, to be able to spot how it might affect our particular lives. We have looked into a wide range of treatments available and have tried at least several. With some of those we may have dealt with some moderate to severe fallout: side effects, bodily reactions, or even psychological trauma.

I reiterate: We are far more likely to know what is going to help us live our lives than you are, however informed you think yourself on the subject. (And if that is “not very,” then, well, I am going to let you extract your own set of conclusions from that information.)

And even that aside, it can be dangerous to be constantly on-the-ready for whatever new tip, trick, herbal supplement, voo-doo diet, self-absorbed practitioner, or, yes, drug that any random acquaintance can come up with.

Yes, I said dangerous.

I don’t think a lot of people have any appreciation for what life with disability means. For how much has to change. Most PWD significantly restructure their everyday lives in ways that are invisible to even the most well-meaning of outsiders. The little idiosyncratic things we do: arrange our furniture a certain way, walk in a certain path, arrange our schedule certain ways, change when we sleep, eat, shower, or travel, perform tasks in a manner and order a normal person would not. We cut corners, don’t make the bed, don’t “do” our hair, rewear items of clothing, don’t wear certain items of clothing, wear items of clothing considered “inappropriate” for the setting. We make battle plans for every day in our life, micro-managing all those little things, enumerating all those little trade-offs, carefully managing the cost of every factor in every action.

Hang on, I’m going somewhere with this:

The first six months I lived in Orange (California) I didn’t have a car. Fortunately Orange County funds a decent public transportation structure, and I was able to take the bus whenever I needed to go anywhere. And the bus stops were common and the routes were frequent, but still, consider grocery shopping. It was either a mile’s walk to a bus stop for a route that took me straight down that street to the nearest grocery store or 3-4 blocks to a bus stop where I would have to take two separate routes to get to the store. And after all that walking and waiting in the hot sun on the hard cement (yes I sat) and then all the walking across the street and parking lot to the store’s doorway and then all the walking and stopping and standing around the store, half of which was painfully cold, and then all the standing and waiting in line and the energy it took to be sociable to the clerk and whoever else thought it was just dandy to strike up a conversation, and then, and then! I got to go out the door and do all that (minus the shopping part) over again, but this time carrying several bags of heavy groceries on my arm, worrying that my milk and meat might go bad in the hour-and-a-half it took to make it back to my front door.

And the dilemma I was faced with was: I only have the strength to make that trip every week and a half, two weeks. But if I buy enough groceries to last that time, that increases the load I have to handle on my way back (especially taking the first route, which would cut my time down to an hour) so much that I won’t be able to make the trip that often. But if I only carry the amount of groceries that I am able (and I use “able” very loosely) then I am going to run out and have to return to the store five or six days from now. And I am already making the simplest and easiest-to-make meals I can without compromising my nourishment. So what do I do?

I wanted to break that story down — into its most basic factors, I note; there were many more — to make you understand exactly how much thought goes into even the most basic of actions, and how much we have to change just to get those basics done. Although really, this doesn’t tell you what I had to change to accommodate those trips in my schedule: the activities (including, eventually, school/work altogether) I had to give up, the meals I had to skip, the socialization I had to avoid, the pain I went through.

See also: showering. And I bring in my own experience, which is not by any means representative (but which is not as out-of-the-ordinary as some might protest) because it is all I have to speak from, and because it helps put these concepts into human stories. It takes the hypothetical into reality. And it shows exactly how much I have to change when attempting to negotiate life with my disability.

What a lot of people don’t realize about their off-hand treatments is how much trying a new treatment messes with our already-set routines. Just to start off with those controversial little drugs: I might have to come off some, or all, of my current medication to try it. Then I have to deal with the side effects, which may fade off after several weeks or months, or may persist. Then I get to wait a period of time before it even begins to “kick in,” that period of time being anywhere from one week to six. I may have to titrate the dosage up, depending on the medication, which may take months. And then I get to wait until I’ve used it while it’s doing something long enough to have an informed opinion about how much it helps me. And then if it isn’t what I need it to be, I may have to titrate that dosage down or else go through a very scary withdrawal period (and I’ve done it).

That can be six months of my life. Months spent in pain and discomfort, months perhaps without being able to use other effective treatments, months dealing with side effects and reactions, months where I may be cranky and irritable and impaired cognitively. Months where, depending on the type of medication, I may be “out of it” emotionally so much as to render me a hermit (as which I have, fwiw, spent probably a year cumulatively). Months where I am taking comments wrong, imagining things, and possibly being preoccupied with death for lack of an effective treatment.

For some people it is simply not feasible to give up their current treatment to go be “open-minded” about other available treatments; they could very easily end up dead. And even those who don’t are denied weeks or months of time that could have been spent functional, without pain, without worry.

Are you willing to “suggest” people give up that time?

Even non drug treatments: say, for instance, exercise. You may have gathered from above that physical activity has significant cost for me in particular. How does one trip to the grocery store compare, on an objective level, to energy spent on one session doing cardio, weight lifting, yoga or tai chi? Isn’t the latter usually significantly harder? And I am to fit this into my schedule at least a couple times a week, how?

Of course, the sort of activity recommended for fibromyalgia is usually gentler; my current physical therapy has me doing very basic stretching as a means of building muscle strength. And it is usually done for a shorter period of time. But even ten minutes of stretching or walking takes away far more than ten minutes of my time. It takes away energy that could have been spent doing something far more important (like scooping the clumps of piss and shit out of my cats’ litter box) and creates pain, building exponentially the more time we’re talking about, that will be inhibitive later on down the line (to say nothing of, well, what it means to feel that pain in the real time).

And all this is purely physical cost; something else I feel is under appreciated by most people is the toll that all these things take on us emotionally. I only have so many spoons to use on physical tasks every day, but when it comes to mental aptitude a lot of people still expect me to have unlimited capacity. It doesn’t work that way. Again, the thousand little cuts: for every further thing to which I have to pay attention, for every further thing I have to change, for every further ounce of pain, fatigue, frustration I have to feel, I am sapped of mental energy. Sapped of spirit, you might say.

So when someone proposes that I go and research this New! And! Exciting! treatment, and learn how to use or perform it properly, and spend my time practicing, and incorporate it into my usual routine, they are often unaware of exactly how much it is they are asking me to do. And that’s after I tend to their fragile feelings of rejection if I fail to make positive noises about their Oh! So! Helpful! suggestion.

I only have so many things I can hold in my mind all at once. Which is why, sometimes, though I read your email and I haven’t forgotten you, I haven’t responded for a couple weeks now. Or why, sometimes, I put off making important phone calls, because I don’t have the energy to fight right now, even if it’s a simple task, I’m just tired of having to struggle and struggle to get even the simplest things done, I’m just so tired of facing so much resistance at every step. It’s like if every time you moved an inch you slammed into a brick wall. WHAM! Another inch. WHAM! Another inch. WHAM! WHAM! WHAM! WHAM! Oops, had to repeat that one for good m–WHAM!

At some point you just want to collapse to the ground and shout to the world, OK, I’M DEAD ALREADY!

And again, remind yourself that you don’t know their history, their current condition, their emotional state.

Because, well, I’m just one person. And let me tell you a little bit of my history.

I have fibromyalgia. Fibromyalgia was the “waste basket condition” in the 90s. It was what every doctor would throw at that pain-in-the-ass patient (usually a woman) who just wouldn’t shut the fuck up about how they hurt and stuff. Even though they weren’t showing anything up on tests. These women would return and they would whine and whine and be all, like, hysterical and stuff, so finally you’d throw this name at her and shuffle her out the door and on to some poor unexpecting specialist.

People with fibromyalgia have a complex about this. Because they have been told for ages now that it is “all in their heads.” That they are imagining their pain, or exaggerating it, or just looking for things to complain about. (Is that ringing any bells for you, feminists?) That it is psychosomatic, or that they are pathologizing all the small things that don’t matter in the long run.

And the market is ripe for exploitation, moreso several years ago before the new class of drugs came out to treat fibro with some degree of efficacy. It’s altmed on crack. There’s not a diet program out there that hasn’t been sold as a “cure” for fibromyalgia at some point. And there are any number of doctors, nurses, chiropracters, fabricators, and just plain wanna-bes who are pushing their treatment for fibromyalgia even when it fails to stand up to scientific analysis. Herbs, vitamins, and nutritional supplements, exercise programs, pseudo-religious/Eastern-appropriative hand-wavey woo, and many others are regular characters on the cast of alternative medicine solutions for fibromyalgia.

I’d say I’d already been pitched every one of them at some point or another, but that understates the sheer vastness of this field. Probably a hundred new “treatments” have popped up in the time it took to type this sentence. Needless to say, I think I’ve got the general concept down pat, thanks.

What makes it dangerous when someone tries to sell me one of these treatments, and hell, not even just the “alternative” ones, is very similar to why it can be dangerous for a sexual assault survivor to read past a trigger warning. It chips away at the defenses you have built to protect yourself from future trauma, and it whisks you back to the trauma you have already experienced, and abuse survivors will know what I mean when I say it returns you to the frame of mind that you had when the abuse occurred. You don’t just remember the event(s), you remember the way you thought around the time the event(s) occurred.

In my case, it takes me back to the frame of mind I was in when I was first diagnosed. It’s the frame of mind that says, you’re normal. The frame of mind that says, nothing is wrong with you. The frame of mind that says, push forward. The frame of mind that says, you’re imagining things. The frame of mind that says, you can’t trust your own perception.

And really, that’s what it boils down to. It’s an assault on the protective framework I have built for myself. It tells me that I can’t trust myself and the way I see things right now. It tells me that other people’s perceptions are more important than my own. It tells me that other people’s opinions override my own. It tells me that other people get to decide my life.

And you aren’t really trying to decide my life when you make these suggestions. You don’t feel that way, anyway. But that’s not what matters. What matters is that I spent the better part of twenty years saying “yes” to every invitation, taking seriously every criticism, and spending all my time worrying what other people thought of me. I spent that better part telling myself I was faking it, exaggerating it, imagining things, while also taking to heart every suggestion that I just think positive/get some sun/take a walk/write a journal.

I spent that better part mired in self doubt, always questioning my own thoughts, experiences, and feelings, while immediately accepting everyone else’s without a second thought.

Over the past five or six years, I have slowly, carefully, and deliberately built a protective wall around myself, re-trained myself to think, behave, act, and react in certain different ways, and made a concerted effort at re-gaining my own trust.

The thing is, though, as any survivor will tell you: That wall is not impenetrable. In fact, every little assault chips away at it, slowly but surely. And sometimes, I have enough of a buffer built that that one casual comment won’t faze me, all told. But sometimes, the world has not been so kind, and my defenses are significantly worn down, and all it takes is that one stray comment.

And I’m back in that frame of mind again. I feel OK right now, why don’t I go move around all my furniture? or I’ve been very absent lately, people might suspect me, I’d better not decline any requests or invitations for a while or you know, this person was just trying to be nice, and maybe they’re right, I should have an open mind, maybe I should try whatever it is they’re suggesting even if “what they’re suggesting” is “just stop thinking about it so much” or “don’t sleep so long” or “exposure therapy.”

And even a very small time in that frame of mind can have very long-lasting effects. It isn’t just a couple moments of self doubt and then move on. The decisions I make when I am under the influence of that kind of thinking means I am going to be feeling those “couple moments” for a long time.

That’s just one person, and that’s just one condition. But my bet is that the same general thing also goes on in people with depression. Or with lupus. Or a lot of other “invisible” conditions. But even some of the “visible” ones sometimes too.

Certainly a few of those 49.

You say you care about the well-being of people with disabilities. What about those?

Or do they not matter if they are not stroking your ego in the process?

I’ve said before that convincing Don that it was okay to be exhausted and that he didn’t have to be anything for me was a huge uphill battle. His mother, bless her, was very much of the mindset of “We have to appear normal”. He’s got hearing problems in one ear that having a hearing aid would have made a huge difference for when he was in school, but he had to “appear normal” – act normal, pretend nothing is wrong, struggle through it, smile the whole time. As he’s gotten older, his chronic pain from the Marfan’s has gotten significantly worse, but the support from his family & many (not all!) of his friends has dropped. He’s “anti-social”, he “needs to get out more”, he’s “lazy”.

It’s been a hard thing balancing the needs of our relationship versus his right to be unwell – and it’s been such a steep learning curve for both of us.

And when he’s having bad days, I have to remind him, still, that I will still love him if he’s not pretending to be okay. I’ll still love him if he doesn’t smile and put on an act. He doesn’t owe me anything. He doesn’t have to be someone.

I know his mother did the best she could, and her life was not kitkats and roses when Don was growing up, but watching her get very upset when Don got a cane, when he went in to specialists about his ear, and her fear that he won’t be “normal”… It’s just so aggravating for me, and exhausting for him.

Thank you! I also want to point out that the right to be unwell (thanks Anna) and the right to be sick, the right to HATE it when people tell me that I’m “so brave/courageous” IS, in fact, my right. Being brave or well because it makes YOU (other) feel good, is bullshit, but unfortunately, it’s also something I fight against constantly.

A point I forgot to make, too (I had a lot of them!) is that we already live in an unsteady, unstable world, facing unending resistance, with every breath we take. When we finally get a routine worked out that works for us, we really, really don’t want to do anything to fuck with that. And then here comes this person who wants to tell us “well have you tried (x)” and it’s just another little cut when you’re already bleeding all over the damn place.

I can’t even go through and quote all of the parts of this that speak to me because I’d be parroting half of your post back at you. One thing that kind of struck me that others who aren’t dealing with similar issues might not take into consideration is how long it was . I’m sure it was exhausting to write all of that (and so well), which makes it even more impressive.

I don’t have fibromyalgia, but I do “have” PTSD, which is another one of these “it’s-all-in-your-head;get-over-it” problems. I didn’t even know that my problems were “psychological” when I first started to see a doctor. I still hope sometimes that there is something “real” wrong with me so I can get it “fixed.”

And you are so, so right about switching around medications. I’m now off of everything because I couldn’t tell what symptoms were from PTSD and what symptoms were from the medication that was supposed to help “treat” it. Going through withdrawal was terrible enough without the added pressure of everyone around you making you feel like a bad person for not paying enough attention to them; making you feel like a lazy person because you weren’t getting out and getting exercise – never mind that on some days sitting upright in bed was enough to send waves of nausea and pain throughout your whole body…

holy shit i love you so much right now. i had one of those arguments with my mother earlier today, why havent i made X phone call, when she was my age she made all her calls, when am i going to switch around my sleeping scedule (a. when i find a med that doesnt keep me up all night, or develop a dependency on nyquil, kthxbai)

for fuck sake what does she not grasp about my living with ptsd, pmdd, depression, anxiety that expresses itself as overwhelming agoraphobia, and OCD that presents at dermatillomania and trichtillomania. oh, and add to that a chronic condition with my kidney where ive had 15 surgeries and am long overdue for a 16th.

she knos about all of this, shes watched me live with it, but shes just certain that somehow theres a treatment we havent found that will make me “normal” like *poof* with a magic wand and like i just dont want to be ok, like i enjoy living like this.

oh, and also big ups to you about the med switches, im in the midst of withdrawl from paxil and adjusting to wellbutrin and if it were for my buspar and my ortho cyclen i would probably be in a ball sobbing from the zaps, the nausea, the exhaustion, and the headaches.

Haha, it took me reading the whole post to realise what the initial linked comment was about, without reading that entire comment thread.

Fantastic post, and while it’s not an issue I personally have on any level I can imagine (and see!) how angry and frustrated you get with people’s attitudes. I sometimes do think about how having various disabilities would impact on your life and when you really think about it the scope is incredible.

I guess I can relate to the “it’s in your head” thing slightly in that I suspect I may have PTSD. It’s hard to even ask for help though because I pass so well, to myself and to others, that it’s hard to explain that I’m not actually functioning as an adult – and I don’t know how to help myself. I can’t seem to make myself “just do” pretty much anything I want to do and I can’t imagine how anyone could really help me. I won’t ramble any more about me but truly I can’t seem to make myself achieve anything as I panic when I try and I can’t seem to enjoy anything and even I feel like hypochondriac :\

jessi — my mother has fibromyalgia and she would, quite often, badger me to get up and do things when I was decidedly not in a state to do so (and this was when I basically pushed myself to do everything!). It’s like, hello, you’ve had these days too, you know how much they suck, especially when other people are goading you because you don’t *look* sick (a website, btw, you will probably love). But there she is, doing the same to me that other people do to her.

Just goes to show you that shared membership in any one class != thinking the same way or getting along well.

I was surprised by how much I identified with this post. Really well written. It’s given me a lot to think about in the way I interact with people in general and a couple of friends in particular who have chronic illnesses or disabilities. I am a Juvenile Diabetic and while I don’t consider myself exactly “disabled” I have experienced people who are trying to be “helpful” who have all kinds of great suggestions about miracle cures. My inlaws in particular have tried to get me to start a regimen of health products that they sell that supposedly reduce the amount of insulin diabetics have to take. What they couldn’t understand was that it would only add to the strenuous daily routine I already had to manage and that it wouldn’t even (supposedly) replace my shots. It would mess up my whole life and it could very well have been dangerous to make those kinds of changes. And the fact that they were suggesting some treatment as being better than what my team of physicians had prescribed I found extremely presumptuous.

There have been other times when when people assume that they “know” about diabetes because they know someone who has it or because they’ve read about it. But it has always frustrated me when they assume they know about me and MY disease, which is different from every other person who has the same disease. Because it is different for every person. I could really relate to what you were saying about each person’s disability or disease being different.

I never appreciated the fact that diabetes is at least accepted as a “real” disease. Of course I understand that fibromyalgia and PTSD (as described by Hysterical Woman in the comments ARE real diseases. But I can’t imagine dealing with the stigma of a disease that is not as clearly diagnosed as some other illnesses.

Dana: It has taken me years, years of sustained effort to finally, most of the time, not feel like a hypochondriac. Most of the time.

It comes with the territory, seriously, so don’t beat yourself up over it. And while you’re (not) doing that, do a little side looking for a decent dr. or counselor. The thing that sucks is, for most people, it takes a few tries before you find a practitioner who communicates well with you, has good understanding of your situation, is knowledgeable about the condition, etc. But if you feel able, do try.

It is really hard to acknowledge the full extent of what you’ve got going on, and to start to try to understand it, so that you can learn to work with it better. It’s a huge task. But trust me, it is so much better. It takes time, and work, but it is worth it.

Don’t push yourself to do anything you feel you can’t handle. But, if you feel you can, start looking around. You aren’t imagining things or making things up. And don’t let anybody else try to convince you otherwise.

I have ADHD — really bad. It’s not a physical disability, but it is a disorder nonetheless, one of those invisible ones. I hate that whenever I tell someone that I am a person with ADHD, I get the weirdest responses, everything from “But you seem so normal!” (so fantastic coming from the special needs staff that I work with) to denials that it exists.

Worse yet were the judgments: whether or not I was on medication. Have I tried “Natural” cures? Try this type of juice (which I’m allergic to!). Try this diet! Or people telling me that I wasn’t loved enough as a child.

I do what is working best for me. I’m responsible for myself, for my condition: how I treat my ADHD, my bursitis, my scoliosis — or anything else I may have, is between my doctor and me. If I want your opinion, I will ask. If you need to know, I will tell you. Trust me — it’s my body, I know how to use it!

oh totally, my mom spent 20 years in therapy and still struggles with depression and anxiety, hell, for most of my life shes been on either valium or xanax. i think she might actually be more sympathetic to where im at were she not also living with mental health issues. she sees how she handles it, and how functioning she can be, and seems to assume im just not trying hard enough, cos if she can do it i must be able to too.

when i explain everything in the context of disability she tells me not to label myself, becos then i cant get “better” and be “normal”

i love her soooo much but sometimes i want to scream when she gives me her well meaning advice

i grew up hearing her mantra “no feeling is an emergency” and it didnt make a difference at all in how i felt except to add in irritation at her fucking rose colored glasses view of my mental health.

Gods bless you. I think you’ve been reading my mind. I’ve fibro AND Lupus, a loverly combination indeed. It’s so hard to explain to people why I’m so so so tired all the time. I’m 33, why am I so tired? Have I tried getting more sleep? A new mattress? This suppliment? Yes. Yes. Yes. And ya know, there isn’t anything that can be done. Extreme fatigue is a hallmark of my illnesses and I just have to learn to cope with it as best I can. But explaining to people that going to the grocery store is sometimes ALL I can do in a day — and that when I’m done I’ve got to lay down and take a nap — well, people don’t get that. I’m trying to make myself accept the fact that, ya know, maybe I should consider a shower chair for those days that I just cannot stand up long enough to take a shower. But…my /grandmother/ has one of those. And I’m only 33. It just seems so wrong.

I never really thought about asking wheelchair users whether they would like me to hold heavy doors open until a neighbor told me – “No! I need the exercise.” Point taken – that hadn’t occurred to me. There needs to be a chapter in the “Idiot’s Guide to Etiquette” on interacting with persons with disabilities.

There is a hell of a lot of presumption in either thinking that one’s knee jerk, “helpful” reaction will save a life (1 out of 50!) or that it will only minorly annoy 49 out of 50.

What if it drives someone to suicide! (1 in 100?!, but then you’ve saved 2 and annoyed 97 maybe, so you’re *still good*.)

What if, just maybe, your advice saves the life of someone who then cures cancer! Why, you’ve saved MILLIONS of lives!!!

What if the suicide was going to grow up to start a nuclear war?! YOU’VE SAVED THE PLANET!!! It’s *possible* right? Surely y’all can learn to endure a bit of annoying behavior IN ORDER TO SAVE THE WORLD!

I am amazed, but not surprised I guess, that people go down this path of rationalization. It’s natural and I can totally imagine doing it (and probably have done it), but I’m still amazed.

One thing I find that such rationalizers find hard to understand is that I don’t want them to feel bad for making me feel bad…I just want them to *stop* making me feel bad. I dearly hope that sushi dude hasn’t had years of sleepless nights, but I also hope that he changed his behavior and didn’t decide to assault anyone else.

I would like to add that all of these supplements, vitamins, and other unsupported junk that BS pushers offer are often dangerous. I’ve had many people recommend I take iron (because being tired must mean I have anemia!). Turns out too much iron causes oxidative stress and in turn, cancer and (in my experience) worse fibromyalgia-related fatigue. With my cocktail of medicines I can’t risk taking herbal supplements since so many will either keep me from absorbing the RX’s or make me absorb too much. “Alternative medicine” is so often used to mean medicine that has never been tested for safety or efficacy. I will take the lousy, but certain prescription over the craps game of supplements any day.

Amanda,
This was simply wonderful. Thank you so much for giving a reasoned voice to this, while stridently making the point.

Nuri, I’m a highly functional type I bipolar–something I tend to not share with many people at all, given the stigma. But it has been necessary for me to divulge the information to my departmental chair as I finish my PhD sequence and teach, as I have to have some way of explaining my absences (I can pretty much get through teaching while episodic–I respond well to my meds, but the side effects of the meds hinder the PhD process itself). I had to fight tooth and nail last year to get a medical leave as I endured a moderate episode; the side effects of the meds and the episode left me with some pretty intense temporary cognitive impairment–not the best for my chosen field.

The response from my chair–all the while claiming to be understanding, and no doubting thinking he was being understanding–was along the lines of “well, you’ve dealt with this for ten years, can’t you just work through this?” or “you’ve worked through this before, so I know you can do it.”

That was the damning aspect, that I was being told by someone else that “I could do ‘this or that’.” That is where I really connect with this post, Amanda, particularly your emphasis on what others don’t know–they simply have no idea what it takes in terms of your individual aspects of an illness, and yet they are so willing to work from the general idea of what “can” and “can’t” be done.

And, Amanda, the part on medications–really touched home. Juggling a cocktail of 8 or so meds, adjusting dosages based on moods, blood levels, all the while looking for bad interactions and side-effects, renders that “why don’t you just drop it all and try fish oil?” question really annoying, to say the least.

my bet is that the same general thing also goes on in people with depression

Oh, HELL yes. Also a hearty yes to this:

shared membership in any one class != thinking the same way or getting along well.

I have to admit that I sometimes struggle with this myself. My boyfriend and I are both dealing with depression. It of course affects us both in somewhat different ways, though it’s similar enough that we generally do a really good job (if I do say so myself) of supporting and understanding each other. (I literally don’t think I would be here if it weren’t for him.) But even so, there are times when each of us wants the other to “just do” things that their depression makes very difficult for them, and it can cause the kind of feelings of inadequacy and self-doubt that you describe in your post. It can be really hard to always maintain a supportive and non-judgmental attitude towards someone who has difficulty with things you don’t (or hell, even things that you do), even when you intimately understand what they’re going through in a general sense. I’m not at all trying to make any excuses for people who don’t make the effort (or even for people who do make the effort and fail sometimes, for that matter), I just think this is an interesting question because it’s something I deal with frequently and something that I’d like to be better at myself.

Oh, and I just want to say that the issue of medications really hit home for me too. It’s a wretched and slow business trying to find the right one, and impossible to try new ones during the school year when I have to make sure I can maintain a modicum of functionality at all times or risk my future career, but no, I do not think I’d be better off just taking vitamins instead. If I did, then that’s what I’d be doing.

Thank you so much for posting this, amandaw, and especially for linking to the essay about spoon theory. I just got into a fight with my girlfriend, who has a chronic pain syndrome, last night. She’s been stressed out, and I said something stupid that essentially amounted to “Why don’t you resolve this by doing a task that for me is basically a minor inconvenience, but for you is going to wreck the entire flow of your day and essentially be more of a hassle than anything else?” Between reading your post (you and she would probably get along swimmingly, by the way, it’s like she wrote some of that) and the linked essay, you had me in tears. Even though I know the kinds of things she has to do each day just to go about her life, it’s easy for me (the most serious thing I’ve got is an occasional bout of Foot-in-Mouth Disease) to forget how much planning, organization, and energy all of it takes up. The reminder is appreciated.

What gets me is, if these folks think that all our troubles can be solved by vitamins, don’t they think the troubles would have all but disappeared in our society by now? It’s a friggin’ vitamin. I get five dozen of them in my generic-label one-a-day. And I’ve still got all my various medical conditions (physical and mental), huh.

Amandaw, I want to thank you so much for this post as well as the previous ones. I have mixed connective tissue disease (very likely sero-negative lupus, according to my rheumatologist), and just in the last week I’ve heard: “Maybe you’re so tired because you’re sleeping too much”, “Maybe it’s just really bad allergies”, and “But at least you’ve lost weight!” (I’ve been tapering off of prednisone), all from the same person. One conversation/monologue and I’m down half my spoons for the day (folks should check out http://chronicbabe.com , too, if they haven’t yet, btw).

Hard-to-see disabilities are the worst triggers for this kind of bad behavior, but I have seen it happen also to people who appear lost, or discontented with their lives: “You’re not happy? Well, sit at my table, below the salt. I’ll allow you into my world and give you orders. What, you don’t want to? Why not? You need it. What else do you have to redeem your existence? It’s not as if you’re happy.” I guess cults build their ranks on this kind of recruiting.

Respect, please. A person’s life belongs to her or him. It’s not yours to direct with a wave of your hand. Even if you think you’re being kind, you’re probably not paying close enough attention.

“It’s the frame of mind that says, you’re normal. The frame of mind that says, nothing is wrong with you. The frame of mind that says, push forward. The frame of mind that says, you’re imagining things. The frame of mind that says, you can’t trust your own perception.”

I have to say I really identified with this passage. I don’t have anything that causes me day to day problems but I do think, in fact I’m getting progressively more sure, that I have emotional problems. I’m trying to get help but I can’t quite shake the idea that I’m just making it up and I’m really normal I’m just imagining things and I find that trying to talk to other people in my life just ends up with rants about how I would just be better if I did this or I did that or a ate this or took these suppliments, most of which I have already tried just as I’ve tried many things for my PCOS, including medicines that have just left me feeling too ill to leave the house but other people still seem to think it’s ok to tell me to try them again or try harder or give it more time. And every time, especially when it’s family or doctors, I’m tempted to do it even though I’ve tried this supposed miracle drug a half dozen times, at different strengths (building up to the ‘right’ dosage) and it just doesn’t work for me. That’s when they don’t just deny that there’s anything wrong with me.

I think I got a bit off my original topic there so I’m going to stop because I am quite capable of complaining about this for hours. :) I’ve found your posts over the last… while really interesting and thought provoking. Thank you.

We are far more likely to know what is going to help us live our lives than you are, however informed you think yourself on the subject.

Quite possibly someone’s made this analogy, but this reminded me of something I went through when I was first seeking therapy. I worried that I wasn’t really depressed, that the therp would, with their advanced learnings, know that I was just [something mild], and I was just… I dunno, wrong. (I was in that suicidal ideation stage because I couldn’t stand the idea of continuing to be anxious. And I was worried I wasn’t really depressed.)

The response I got back from folk I talked to on this was: while this therp is the expert on depression and anxiety, I am the expert on me.j The doctor may be the one with the degree, but I am an expert on my own self. The mechanic may know cars, but I know my car. You know?

I spent that better part mired in self doubt, always questioning my own thoughts, experiences, and feelings, while immediately accepting everyone else’s without a second thought.

Jesus, right?? I was so relieved to get that diagnosis of GAD, because that meant an external authority granted me leave to be anxious. For me, every time someone said “Get more sunlight!” or “Do some meditation!”, it fed right into my feelings of worthlessness – if I were a better person, I wouldn’t have this anx, I would have done $suggestion right the first time, and so forth. Not to mention, now I can’t talk to that person about my anx or depression, because they’ll ask if I’ve tried their suggestion yet, and oh god. Or I’ll get to say “I’ve tried that” while maintaining that proper vocal tone of regret that it didn’t work and gratitude that they were thinking of me, while feeling neither, and so that drains my reserves to be able to interact with people later on.

Gnrrr.

/aimless rant

I keep feeling like I should make a post about all the things I do to cope with my anx, just so that if nothing else, I can refer to it when someone makes some stupid-ass suggestion at me.

Hi! I admire your writings on this topic, and would like to subscribe to your newsletter.

Thank you so much for these posts, amandaw. It’s so nice to see – in your posts and in your comments – so-called “invisible” disabilities recognized along with visible ones.

It’s also great to know that a community exists where I can read about other people’s experiences with these issues and where I can share my own. There’s not a whole lot of places for people with psychological disabilities to turn. I have a therapist and a psychiatrist, but no one to talk to in “real life” who has actual experience with my problems.

For example, I considered joining two different support groups at college – one was an anxiety support group, but from its description, it seemed geared more toward people with “normal” anxiety. I feel like I would be sitting there hearing people say, “I have five papers to write this weekend, and it makes me really anxious” and then when it came to my turn, I’d have to say something like, “I stepped on two cracks in the pavement today, and it made me really anxious.” They’d look at me like I was crazy.

Then there’s a group for people with disabilities, where I’m afraid no one would consider me to be disabled and see my presence there as a kind of insult.

I just wanted to say I’ve really valued your series of posts here. I was pretty lukewarm at first- I don’t have much experience talking/thinking about ableism, and it was all a little… surprising, I guess. But seeing others respond to your posts and seeing you respond back to them has given me a much richer and fuller perspective from which to think about these issues. I didn’t get what you were saying at first, but I think I’m starting to.

My major disability of moderate to severe hearing loss. It’s a pretty bad disability on its own, but it also has harsh social consequences. As one of my pre-med teachers went…”I’d rather be blind than be deaf.”

When it’s too hard or too bothersome to talk to someone, people mostly don’t talk to deaf or hard of hearing folks. So I *never* got much of the “have you tried (x)?” The few people who *did*, well, do you know what? They were helpful and knew stuff. I was encouraged to double-check to see if my hearing loss wasn’t nervous system in origin. No help there. However, such people told me about hearing aids, hearing services, state resources like the Dept of Vocational Rehab, etc, etc, etc. I was helped by people who gave unsolicited advice. In a time before there was a World Wide Web… Again, this is in a world that is so ready to socially isolate deaf people, such that there are genuine moral issues about curing those that can be cured.

I don’t think amandaw wishes to create hard and fast rules about anything. I think everyone has to think about what they say, and how they say it, and measure help such that it benefits the person you want to help without regard for your own self-image.

Thanks for this and the previous post. You articulated something that’s been frustrating me for a long time.

I have anxiety and depression issues that make working very difficult for me, especially long-term (so I work for a temp agency; temp jobs are still a struggle, but at least they have an end). It’s infuriating when people (with the best of intentions, I’m sure) tell me there’s nothing wrong with me, or ask me why I can’t “just work through it,” or suggest that I try doing some “productive” thing that would make my problems worse by vastly increasing the amount of stress in my life.

The way people usually offer these suggestions–as if it’s no big deal to do x, and they just can’t understand why I’m pretending it is one–is the worst part. I already struggle with my self-image. I don’t need to be reminded that my mountains are other people’s molehills.

The backhanded compliments are great too: “You’re too smart not to have a real job.” Thanks for that little kick in the teeth, well-meaning friend.

Xtina (I got your comments;)) — when I did cognitive-behavioral therapy for my anxiety, it lasted a few months, until I was getting close to moving out here (CA to PA). At the very end — it had been six months at my mother’s house, six months since my anxiety “crisis” (no more antidepressant + mentally ill and abusive mother = aie) began — I asked the therapist, meekly, just for the sake of accuracy when I got to my new doctors of course!, did he have an official diagnosis for me?

You have to figure, he’s treating an anxiety patient, he can see right through that — but he gave me mine (just anxiety disorder NOS, I had elements of GAD and SAD with panic attacks but fit none of those conditions precisely) and oh my God, you have no idea — actually, you do — the relief that I felt at that point. And I had spent the entire therapy very, very careful not to ask for that dx or reference it or my desperate desire for it, so that I wouldn’t come off as a hypochondriac or something. So, yeah, I had a lot built up in that answer…

shah8,

You know, you smacked me across the face with my own pseudo-privilege that left me feeling rather chastened. Esp. wrt public resources, as I have experienced countless times, in my own life, my family and friends and acquaintances’, that benefits that could have been a huge help went unused simply because we had no idea. It’s not like they advertise.
(Actually, I’ve found out, in PA, they do. And it made me proud to live here when I first heard one of those radio ads.)

And thank you for your generosity, and I love your last line. It puts it all together so perfectly.

Amandaw, I so want to hug you right now, it’s absurd. As in, I could sit here hugging my laptop trying send an intense e-hug of the “ZOMFG! You understand! And you said it all! The bravery of all that! Oh, how you rock!” right now.

All I’ve got is depression and ADD and anxiety and the lactose-intolerance thing — a nice grab-bag of the “Shut up, you don’t have anything at all/You don’t have anything bad” stuff. […was about to write a bunch of yada yada about my experience, but yeah, you’ve got the ground covered already].

Just, well yeah. I don’t know how to express the appreciation properly, I’m so floored. Thank you.

And honestly, there is some amount of tension between concerns of one group vs. another in these sorts of situations, where we can’t exactly prioritize one over another based purely on privileged vs. historically-oppressed.

And in these cases, the answer I fall back on tends to be: This is a problem in the first place because we live in a deeply fucked-up world. It is not the fault of those who suffer the consequences that it is that way. If we work to eliminate (in this case, ableist) privilege, then we will be reconciling both differences, rather than forcing two burdened groups to fight one another.

My therp gave me my diagnosis without my prompting, so far as I recall. Which was so incredibly fantastic – I wanted that so much, because I know I’m anxious beyond measure, but I didn’t trust anybody else to trust me without that slip of paper.

I could throw a whole lot of words at this, but it’s seeming like you know what I mean. :)

I *do* get the stupid advice for jobs, though, much in the way of zw @ 37.

So it’s not like I haven’t had this kind of thing go on. Just not with respect to my hearing. So it’s not as if there isn’t a point to what was written. Just that it’s not “It’s the Thought that Counts”, but “Think with Empathy before You Speak”.

The backhanded compliments are great too: “You’re too smart not to have a real job.” Thanks for that little kick in the teeth, well-meaning friend.

Oh God, I was one of the rising stars in my HS class. I should have graduated valedictorian, gone on to head up the college newspaper and then worked toward a graduate degree in the field of What Ever. Teachers, counselors, etc. simply showered me with praises. And here I am: my work history is six months at a greeter at a local equivalent of Denny’s, and ten months in a small retail camera shop. I am currently pushing for a job as state clerk (read: secretary). And those 45 units at college that I attempted, yeah, I finished 15 of those. That’s a 1-in-3 success record just in finishing the course.

Yeah, there’s the makings for a MAJOR inferiority complex there. Fortunately I have a loving and supportive husband who is also just a pretty damn cool guy to be around, and I am building a life and a social circle bit by small bit over here in TheOtherHalfOfTheCountry IHadOnlyVisitedOnceBeforeMovingOutTo. And I like that life, quite a lot. But measuring by what a normal person “should” have accomplished… yeah.

It’s quite the dissonance, sometimes, when I feel really good about my life and I think about going back and talking to some of my favorite teachers or classmates, and I think, what am I going to tell them? Yeah, I… don’t work at all… nope, never finished college either… once in awhile I take a no-credit juco course… yeah.
How can the conversation, from there, *NOT* end up being all about how much my life sucks?

Jeepers thanks. Especially for the butyoudontlooksick.com links in the comments.

I had a professor say that to me after I explained some of my special needs as a result of chronic disease. “Well you look fine to me. Just don’t use it as an excuse to slack off.” I had to just turn around and walk away because I knew the only thing that would come out of my mouth would be a vile vile profanity.

“The thing is, though, as any survivor will tell you: That wall is not impenetrable. In fact, every little assault chips away at it, slowly but surely. And sometimes, I have enough of a buffer built that that one casual comment won’t faze me, all told. But sometimes, the world has not been so kind, and my defenses are significantly worn down, and all it takes is that one stray comment.”

Heavens, I hear you on the paxil withdrawal thing — been there, about 5 years ago. Hang in there, it may feel like it’s unending, but it does end. The shakes do stop, the chills and the nausea and the strange digestive evilness, it all stops. Really. Good luck!

to JJ @ 21: So help god, if another person tells me to try fish oil, I might have to kill them. When did this stuff get to be the answer to everything? People have suggested it for my ADD AND my fucking endometriosis. Seriously.

Seriously. I work in a pharmacy, and I get so many people who come in to buy a vitamin/cream/tonic/whatever for “a friend who really needs it”. I ask them, as I would for any customer, “does your friend take any medication?” and they are incredibly surprised that a wonderful!!! natural!!! vitamin!!! could have serious interactions with some medication that they can’t remember right now, but she takes lots of pills. I then ask them to have their friend come in or call if they would like this vitamin, but strangely enough, they never do…

Personally, I was thought to have chronic fatigue and depression leading to major weight gain. I had all the comments you might expect, including doctors telling me I was lazy – then 18 months later it turned out to be thyroid cancer. Everyone was immediately very helpful and stopped the “go for a walk” comments, but then I got over the cancer, and everyone was very shocked that I didn’t immediately get better – and the comments came straight back. I’m not sick now, how about I lose 100 pounds!

The best part about the recommended fish oil is that it isn’t the normal, store-bought stuff. It’s an “ultra-pure” version that’s really expensive. The studies that have been done tend to have small sample groups or somewhat inconclusive results. And the best past is that the studies which do show “improvement” are ones where fish oil is used along with mood stabilizers.

The issue with that, of course, is that there’s no way to differentiate between the mood stabilizer working over the long term or the fish oil working. And, there’s also only one (maybe two) studies on fish oil and bipolar disorder that are long term; i.e. a year or longer.

Esra @ 44,

As a professor I’m horrified by what you experienced. I’ve had the pleasure (and I do mean that) of having several special needs students in my classes. My classes, which are required gen eds, involve a large amount of reading and writing, as well as other activities that can be challenging for certain people. I am proud of my school developing a more than competent special needs department that works with individual professors in order to educate us how to adapt.

Go ahead with the profanity, drop the course, and file an official complaint. It’s probably just end up in a wrist-slap, but perhaps a lesson will be learned.

By the way, I’m suddenly aware of using the phrase “special needs student.” I’m not partial to it, but I’m using it here for the purposes of participating in these comments. Students are students; professors are the ones who have to adapt to individual needs for any and every student.

JJ, you sound like the type of Professor I would have loved to have had for my classes. I didn’t go through Disability Services when I was in college, and told probably three professors throughout. One professor, when I took night classes with her, would make sure that breaks were always taken, which was pretty much my only need.

One of the others I went to her office to ask if she had ideas for learning some material differently gave me, “Oh you poor thing! How amazing for you to make it this far!” She was a good teacher (and my minor adviser), but I hated that comment. I mocked her for the rest of the day

I work as a Teaching Assistant now, and as a TA, it sometimes becomes really damn hard to see where the boundaries are in that situation.

Quietly commenting to add to the hymns of praise, and to thank you for sharing. My aunt is currently fighting to get disability from a judge who thinks her fibromyalgia is all in her head and/or that it somehow isn’t “bad enough” to qualify her. We may not be close but, well, I just want you to know that I hear you.

i had that school experience. i had gotten an A on every assignment and an A on my portfolio in my drawing class. i had recieved a B on the midterm and an A on the final. on my work evaluation my prof actually wrote “you are very talented. you would have gotten an A in the course, but you missed 11 class sessions” i had made certain to email him any time i was going to, or had missed a class.

on the last day of class i asked him to speak with me in the hall, listed off all the psychiatric disorders i live with, and even told him about the childhood trauma that triggered everything in the first place. i listed off all the meds i was on and explained that i was in the process of adjusting to all these medications and really i was trying my best. he asked if i had documentation in the schools disabilities office and i explained that with my agoraphobia, going to a place im not familiar with and talking to strangers was pretty much terrifying and impossible. he understood and i recieved the A i had earned in the course. that i had to explain anything to him, when i had turned in every assignment, did well on every assignment, and did well on the tests didnt feel fair. im an adult and i should be treated as knoing what is best for me.

Thank you. I deal with arthritis and a permanently farked knee, as well as serious asthma. I have two sisters with fibro who are convinced I have it too, but I havent been diagnosed. I’ve also struggled with serious depression from time to time.

The invisibility sucks, and whats worse is the stuff you put on yourself about it. Two weeks ago, I took a trip which involved 4 planes in three days, and a lot of walking and standing. By the time I got to the airport to go home, my knee hurt so much I wanted to hit something hard. I actually coughed up $80 to upgrade to a seat with a bit more leg room…and I did something I havent done since I was on crutches – I asked to preboard the plane so I wouldnt have to stand in line getting to my seat. I felt horribly guilty about it, but damn, I was hurting, and I finally had to admit to myself how much the trip had taken out of me. Of course, other people couldnt see that and the looks I got for sweeping to the front of the line and boarding were very unpleasant.

I feel guilty when I use the disabled stall in a restroom too, though with the higher toilets and more leg room it makes a huge difference for me. Still…the looks I get from people when I do that make me feel about two inches tall.

Sometimes I feel like I should hang a sign around my neck that says “Really…I have physical issues you just cant see. Wanna look at my scars?”

Stamina is huge for me too as I get older, and people say “Oh just get some rest, you’ll be fine.” But I work 70+ hours a week and I feel like all I do is work and sleep as it is.

I’m so glad it’s not just me, who gets annoyed and even more depressed, when people suggest I cure my depression by taking walks in the sun. Or even better: “Smile! Smiling releases endorphines and will make you feel happier!” Cause that’s a bit of science that most people know by now. And yes, it works… UNLESS you’re clinically depressed. A depression is far stronger than the small amount of endorphines a smile might release.

And even better. When I gripe about how frustrating it is to not know how to get better, and I mention suicidal thoughts resurface again, some people find it necessary to remind me: “Think of your family!” Yeah, ’cause that’ll immediately cure any suicidal tendencies I might have had, when some members of my family have some of the credit for pushing me to the levels of badness I currently inhabit. Yep. Will definitely help. Bah.

And get one of those artificial sunlight thingies, to get sunlight even during winter. Mmm hmm, and I suppose sunlight will remove all my bad memories from my childhood?

*sigh*

If only. I’ve never tried the sunlight therapy, thing. The reason is simple. I can mention the first 5 outside factors that are causes for my depression. Once I’ve worked through those I might begin looking at other forms of treatment if necessary, but until then I’m thinking “One at a time!”

It seems a lot of helpful people insist on advising me (and others), even after they’ve been told that they’re not helping because so and so… I’ve diagnosed them with my father’s expression:
The “don’t-confuse-me-with-facts”-syndrome. Unfortunately I have yet to discover a cure for this ailment.

Especially as TA, the boundaries are fuzzy–which is not a good situation for either party. I’ve always used the “Open door policy” line in my syllabus and first day lecture, stressing that I was there if a student needed to talk–about anything. In my 4 years now teaching (with a semester of TA-ing in there), I’ve had a good amount of students approach me with issues like those discussed above–both relating to class performance, and just seeking resources for help (something I think profs need to be taught how to provide).

Night classes are especially tough; they absolutely destroyed me, after working a full day, then enduring a three hour class. About half of my profs took breaks every hour (I think that’s the longest one should go), but many would go on and on for two hours as we suffered, and didn’t absorb anything. It was especially hard as I struggled to balance my diet so my depakote levels wouldn’t spike in the evening.

I can’t speak as if I’m especially good at the student/professor relationship in terms of these issues; I’m still learning (well, I think honest professors are always learning), but I do think the advantage I have is that I am struggling like my students. When I’m having a bad med day, my hands are shaking, and I can’t read my notes, I’m forced to go by memory (if that’s working, that is), and I know my students can tell. It’s that they are, almost always adapting to my needs that makes everything work.

In the end I think Amanda’s advice goes double for those teaching, especially in college. We’ve been forced to go so “hands off” lately in terms of our students’ personal issues that profs often forget, as soon as a student is 18, we legally cannot discuss ANYTHING with the parent without the student’s consent. So we have to be open for our students needs, while at the same time providing them with resources, and not acting as specialists ourselves.

That brings it full circle, in a way: we’re never specialists with our students’ diverse needs, but on the other hand we do have to be open and understanding of those needs.

@JJ, alas it was a req course for my program and at 400$ a pop and highly subjective marking (whoo graphic design!), there isn’t much recourse for inappropriate behaviour from the profs.

Sadly enough, that college experience was a step up from my university experience wherein a professor tried to refuse my special needs (the office was actually called Special Needs) accommodations for exams because he didn’t know the campus had a special needs program. At that school the onus was entirely on the student to set up with the teacher how, basically, they would accommodate the special needs accommodations.

In my case I needed frequent bathroom breaks, and being in a smaller class room with private bathrooms was my accommodation*. This meant if the exam required a projector or interactions with the professor, I would have to find a way to make it work. They didn’t tell me that mind you, which made my first art history exam a rather righteous disaster.

*I shit you not, the other exams were held in the gym and the stalls in the ‘bathroom’ were actually at the back of an in-use locker room with one of the exam overseers accompanying you. I think it’s basically every Crohn’s sufferer’s worst nightmare.

@jessilikewhoa, It’s insane how much privacy you have to give up in order to achieve good/not failing grades. Like a doctor’s note and you telling them: “I have a medical issue” is not enough, they want the bloody nitty gritty.

I and my family got the worst from my aunt. A very dear friend of the family had recently died from cancer, and we were all grieving his loss. We relayed the news of his death at a family gathering. My father, who was closest to our friend, told of the diagnosis, and the four months during which we saw him waste away to absolutely nothing. Eventually he died, and we attended the funeral, and a beautiful funeral it was, lots and lots of people showed up to honour the beautiful person who had passed away.

And then my aunt says: Awww, they should’ve gone to Sweden, they have much better cancer treatment there.

My father was in tears after telling them about his friend’s death, and all she could think of saying is “they should’ve taken him to Sweden”. We knew it was cancer in the lymphatic system (I think that’s what it’s called in English), and we knew that by the time the diagnosis was made, it was already spreading to everywhere in his body. There was no fucking way he could’ve survived it, going to Sweden or anywhere else in the world.

It is ridiculous. Everyone (or so I thought) knows that if cancer is benign, it can be removed and all will be well. If it is malign it’ll spread, and sometimes maybe a tumor can be removed, but at other times it can’t. And if you have the slightest idea of how the lymphatic system works, you’ll know that by it’s very nature it will spread whatever’s in it to the rest of the body very, very quickly.

And besides it’s just tasteless to start talking about what could have saved his life when he’s already dead and fucking gone.

i dropped spanish in highschool becos the teacher didnt believe i had a chronic kidney condition and was missing school for surgeries and recovery time, despite the fact that the school had full documentation, and i offered to show her my scars. she would see me in the hall and snark “i see you decided to come to school today” grinning this sadistic grin. she also would make fun of my appearance in her spanish lessons, like she taught colors by talking about my hair which was prone to being dyed often, as altering my appearance is one of the major ways i am able to actually assert control over my body, since with my history in many ways my body wasnt/isnt mine.

i also, due to my chronic kidney condition, understand the need for frequent bathroom breaks. nobody comes between me and the potty, but nobody.

One of the things these helpful suggestors never seem to understand is that sometimes we don’t want to take your med/supplement/alternative therapy because we can’t afford it. There’s a new drug for my fibromyalgia. Even with my Medicare Part D, I can’t consider it, it would cost too much. My Part D won’t pay for your very expensive fish oil. My Medicare won’t pay for your acupuncture and massage, which I know is effective for me, but I can’t afford it. No, I can’t have knee replacements for my bone-on-bone osteoarthritic knees because of my fibromyalgia. Yes, I do need three different anti-depressants, and I’m just grateful they are all generic. Taking my service dog for a walk twice a day is about all the exercise I can stand. No, I can’t even afford the reduced rate at the Y. And BTW, losing 100 lbs will not necessarily make my life any easier, especially if I have to have an iatrogenically induced malabsorption syndrome to do it. So no Dr. Orthopedic Surgeon, I’m not going for a gastric bypass.
Oh, lord, have I had to change my life. If I was Amandaw, when I got to the store I would take one of the scooter to shop. I found I had to do this or I didn’t have the energy to put the groceries away when I got home. My dad, who also has bad knees, bought me a scooter, so that takes some of the pressure off of me, except that it is in need of repair right now. But Medicare won’t buy you one to go outside, only one to get around your house. Like I need that in a 600 sq. ft. apartment.
My last doctor was an a**hole, who probably shouldn’t be a doctor. He wouldn’t write me a prescription for a walker because I was too young. I see people who are 30 years younger who need them. I see children who need them. I had to ask Dr. Orthopedic Surgeon for a prescription.
Last time I went to my Dad’s birthday, my sister brought cherries, and we went to my apartment to clean them. I had walked probably ten times more than usual that day, and was in pain. I had my 10 year old nephew wash the cherries while I sat down and took some good drugs so I could be sociable at the party. My sister, who understands, came in and said,”good thing the rest of them can’t see you sitting and G washing cherries, or they’d all talk about how lazy you are. Me, disabled? No, not at all.
/rant

shah8, I’m glad you had a good experience, and I do think that “think with empathy” (or even just “Think” :)) is the right message.

One point of disanalogy in your case is that it seems that the advice you received, while unsolicited, wasn’t drive by. It required significant effort by those people to talk with you and they were caring and clued in about helpful resources. They seem like the antithesis of the person with careless, often reckless advice.

It takes a certain amount of awareness to detect that someone is socially isolated and a fair bit of effort and risk to break that isolation in a helpful way. When people get it right, it’s wonderful. When people substitute callous overbearingness for sensitivity, thoughtfulness, and responsibility, it sucks. No surprises there!

I’ve pointed people who’ve seemed depressed to the campus counseling service and provided some advice on how to deal with them and what to expect and why it might be helpful. Many people don’t know about such services and everyone I’ve thus far given pointers too has expressed gratitude and seemed to have been helped. I’ve refrained from giving such advice to people I didn’t know well or who didn’t seem receptive (e.g., there was this one person who seemed quite depressed but I only had indirect reports on the specific behaviors and we didn’t interact very often in the normal course of things; in order to give this advice, I would have had to intrude quite specifically which, really, wasn’t my place).

Jemima – the distinction between “benign” and “malign” is not quite as straightforward as that – a benign (i.e. not spreading) tumour in the wrong spot can do a great deal of damage and isn’t always removable. But offering “help” after someone is dead? Wow. That’s self-important in the extreme.

As a person who is not disabled (I mean, I’ve got the depressions, but the medicine takes care of that quite nicely), I really appreciate this post. This hasn’t come up in my life simply because I have not known anything about the conditions of the disabled people I’ve met, and consequently have not tried to offer any advice, but I could see how that would be something I might accidentally do. I’m glad you (and various commenters) headed me off at the pass, so that I don’t have to embarrass myself in the future. It is nice to get privilege checks before I do something incredibly ignorant!

Just came back from a doctor’s appointment, where she basically told me that since I had waited several years to seek treatment for this problem, she didn’t think it was worth her time to treat it seriously. I explained I had other medical and professional priorities (moving to 4 different cities for work, cancer scare) which she interpreted to mean I was unreliable and hypochondriac. Moreover, she acted totally contemptuously because I am not a native speaker of the local language. And I’m on the healthy+educated+wealthy side of life.

My point? The medical profession has these behaviors too. If you don’t conform to their idea of disease and treatment, if you have other priorities, expect to be treated under-par.

It has taken me years, years of sustained effort to finally, most of the time, not feel like a hypochondriac. Most of the time.

Word. I’m still working on that. I was told by everybody, including my doctors, for nearly 20 years (I’m thirty now, and this ended when i was about 27) that my fatigue was all in my head. I had to struggle to try to get tests done! Some of them still aren’t done, and although I’m getting treated for one cause of fatigue, it’s Not All Better. (And they still don’t know why my thyroid is messed up, even though it has been at least the past 23 years. But that’s another rant.)

The fear of being seen by doctors as being a hypochondriac has let me not to get medical help for some things I probably should have. Depression being the biggest one I can think of. In fact, there are some things I’m currently putting off asking a doctor about (I’m looking for a new main doctor now –the last one had no interest in managing my care for the two chronic conditions and one major injury I’m being treated for. But even then, I’ll wind up introducing things gradually because of my fear that if I show up with a list of ten things that aren’t going right the new doctor will just dismiss me outright. Again.)

Of course, I also have fears of being justified, too. It’s hard to come to terms with new limitations, isn’t it?

I have relatives who don’t get why I’m not doing X, Y, or Z in my life and my brother gets even more flak from those relatives (different problems which interfere even more with his life than mine do with mine).

There are so many things in this post and the comments that I want to respond to, but I don’t want to write a book here. :)

Came to this thread late, but thanks for putting it all down so clearly.

My partner suffers from intense and very frequent migraines, and much of what you are writing in your post is wisdom I am still struggling to learn in order to be a more loving partner. Thanks for helping me out.

This was a great entry, though to be honest I didn’t really personally connect with the medication or visibly physical disability issue. I tend towards optimism and towards the assumption that the extra effort I have to make is generally normal. Which is probably why I managed to learn how to speak perfectly within my age group despite the fact that I am deaf. The problem I run into is more of a communication thing–both of my hearings aids are at my audiologists right now, so I’ve been depending on my sign language skills to communicate. But because I am “only” technically hard-of-hearing, many people equate that to mean “hearing” and assume I don’t have any problems with vocal communication because even without my hearing aids I speak remarkably well. But they forget that communication is a two way street, and while I may be capable of making myself understood, I cannot understand other people very well, and I am considered an extremely good lip-reader. It’s an unbelievably frustrating problem, and I hate resorting (or others resorting) to paper and writing, because they’re taking the easy (and annoyingly slow) path of communication. Is it so hard to speak a little louder and enunciate more clearly? Apparently so.

she also would make fun of my appearance in her spanish lessons, like she taught colors by talking about my hair which was prone to being dyed often, as altering my appearance is one of the major ways i am able to actually assert control over my body, since with my history in many ways my body wasnt/isnt mine.

Your teacher sounds like a jerk. :( I’m sorry.

My husband does much the same thing – he goes on the theory that if people are going to stare at him anyway, he’s going to give them something to stare at. Hair dye, funky clothes, whatever. He’d rather tell himself that’s what they’re noticing, not the twisted back and the cane and the 6’10”.

amandaw, thank you for writing this – and on a personal note, I don’t know if you just completely fucked up my morning or made me feel sane and less alone. Mainly the latter.

The thing I’m feeling painfully aware of right now is that no one makes my (mostly) ‘invisible’ disability(ies) as invisible as *I* do. It’s not a disability, it’s an injury I just wasn’t able to heal without health insurance, and now that I’m in PT everything will be fine (it’s not, because I was walking around on a serious spinal injury for almost 2 years w/o healthcare, so now it’s serious, complicated and chronic). It’s situational depression (for seven+ years) and it will pass if I just get my shit together. Blah blah. Part of this is just personal survival strategy of not sinking into despair of ever feeling better, but the larger part of it is my continual willingness to treat myself in ways I would *never* treat other people: to have expectations of myself I would never impose on others and do this crazy ‘pull yourself up by the bootstraps’ crap I would never inflict on anyone else who was dealing with a fucking spinal injury, for dog’s sake.

And *this* is the part of me other people’s ‘advice’ to just ‘take a positive view’ or ‘maybe you should really try eating an orange while you spin around five times to the left while holding the yoga pigeon posture and chanting co-opted OMs then throw salt over your right shoulder, take some vitamins, plant some echinacea even though it’s been proven to have no effect on the immune system or mood or bone and joint damage but hey it will reduce your carbon footprint, then burn an effigy of your spine because we all know it’s not that bad anyway and you’re probably making it up’ speaks to. The part of me that is already doing just fine giving myself a huge ration of unhelpful and denial-based shit.

Part of what I also run into is enormous rage about how this injury happened and the complicating fact that for lack of health insurance I couldn’t access prompt treatment. So now I’m looking at what is probably a lifelong source of both pain and re-injury which makes the most basic daily activities I certainly once took for granted (putting on pants, getting in and out of a car, bending to wash my face, etc.) range from simply horrifyingly painful to completely impossible, depending on whether the bone has stayed in place or the ligaments have let go again. And you know, while being able to actually *get* treatment now (thank you VT commie healthcare for people with no money) is great, and a huge privilege (PT, antidepressant/antianxiety), it’s not so much ‘chronic disability’ I fear as the rage and the resulting despair that comes from really confronting a) how all of this would have been avoidable with greater economic privilege and less evil abusiveness in the world, and b) the fact that even when I see my way clear to being half as kind and patient with myself as I am with other people there will be a constant flood of bullshit from other people making my pain (physical or psychic or both) a moral issue *because it makes THEM uncomfortable.*

And you know, I already walk around bitter. Being bitter *and* homicidal isn’t where I want to live. But there ya go.

Also, the ones who don’t do the ‘just cheer up’ crap will insist on ‘I know how you feel, I strained my back last week and it was so sore for like four days.’ No, you don’t know how I feel. You really, really don’t.

Anyway. Thanks for making a space to vent (at great length, cripes, sorry) in company. I’m really mad about all this today. And it is better to not be mad alone.

When I was diagnosed with UC after missing over a month of class, I had to drop nearly every one of them. A couple of teachers were understanding and sympathetic. For one, I had to go up to the 6th floor in a building with no elevators to my GTAs office. “How are you?”

“Too many stairs,” I panted.

“Well, I just came up here,” he snarked.

“But I’ve been sick for two months.” Man, that was annoying, but he wasn’t a dick about letting me drop.

The true dick in the matter was a different professor who, when I told her my reason for dropping, said, “I’m sure.” She let me drop, but that just TRULY pissed me off. I’d been tied to the toilet, had a camera up my ass, barely could get groceries because that was a 10 minute drive and 10 minutes could be too much … and she had the NERVE to disbelieve me. I didn’t say anything, but afterward I had the mind to send her the pictures from my colonoscopy. I didn’t. That was 6 years ago and I seethe about it to this day.

I don’t know if it’s part of the UC or what (I’ve heard it can be), but I get some insomnia sometimes. Past few days I’ve been going NUTS because I can’t sleep. Mentioned it to my mom. She told me to meditate. That’s her fuckin’ answer for everything. Meditate more, get more sun, take more vitamins … oh geez.

Very tangential, but the comments about teachers and professors lead me to add my two cents:

My ex teaches at the community college level, and unfortunately it does help to have the medical details if someone needs accommodations. This isn’t always because the teacher is a jerk, however; as often, it’s because other students have been jerks. They’ve blown off tests. They’ve sworn they didn’t get an e-mail about a project–sometimes using the reply from the e-mail in question. They’ve scheduled other activities–in one case, one of his students decided to take a role in a play whose rehearsal schedule ran at the same time as her night class. Dishonesty is frequent.

It’s a shame that teachers have to be so suspicious of absences, but in many cases, it’s a result of having good faith trampled on over and over again. A lot of teachers would like to help; they’d also like not to be chumps, and navigating between the two is tricky.

The ones who disbelieve documentation, on the other hand? Are just assholes.

This is another great post. I just want to chime in as a current grad student/TA that at many schools, your professors and TAs are specifically instructed by school administration to ensure that accommodations for students with disabilities go through the disability office. It has been part of my training that if a student comes to me to talk about accommodating a disability, I am supposed to ask them to go through official channels. I think this is meant to a) prevent professors/instructors from just making up some accommodation that “sounds good” to them without any understanding of the disability, and b) force instructors to take disabilities seriously (i.e., they come from administration itself, so they’re more “official”). It sounds like many people have had real jerks for teachers, and I’m not saying this to dismiss that–just to say that if your instructor *doesn’t* seem like a jerk but still wants to see your paperwork, it may be because he or she has been trained that that is the best way to accommodate your needs.

I was very, very fortunate to have mostly understanding professors. My “accommodation” boiled down to lenience on project due dates and excessive absences. I found it very difficult to force myself to go through the Disabled Student Services, seeing as how I was only just facing the fact that my disability meant I had to change anything at all (despite having been changing things for years by then). But I did my best.

I’m actually facing similar troubles right now, job searching. It’s hard to explain why I can take 20 hours if the job involves anything physical (lifting, moving, walking around) but full time if it doesn’t. I don’t want to have to disclose my disability until I have a job lined up, bc law or not, there is no way to prevent someone from discriminating against me based on it. But then it is difficult to chin up and discuss the disability with my supervisor when I am hired — I went through some extreme awkwardness in addition to the extreme pain when I had to call in after *two days* of my last job and say “I know it’s not like I gave you any notice or anything, but I have a disability and it turns out I can’t work this job — sorry!!”

It IS worth it to go through official channels. You deserve the accommodations. But sometimes when you’re already struggling with understanding what’s going on, it’s hard to make yourself do that.

jessilikewhoa- I never told any of my professors about my agoraphobia. I made up excuses every time I didn’t make it to school – or made it to school only to come home early – and hoped that my straight A’s would make up for my poor attendance. Luckily, none of them ever seemed to care that I missed so much school, so long as my grades were up.

The only people who ever demanded to know “what was wrong with me” were my friends and the school nurse. My friends always said, “You were out AGAIN!” and I’d reply, “I was sick,” which was true.

The school nurse was awful, though … after my zillionth visit wanting to go home because I didn’t feel well (actually panic attacks) she demanded, “Is there something WRONG with you?” I broke down and told her I had agoraphobia. She just acted disgusted, like I was a big waste of her time. She made me wait in this little room for a half an hour while she called one of the school’s psychiatrists. I kept coming out and telling her I thought I was dying and she should do something. Of course, I wasn’t dying, but I certainly felt like I was. She just kept bringing me back into the room and telling me, “You need to stay in there!”

Fortunately, the school shrink was very nice and understanding. She seemed to know that treating me like a normal person – instead of a lunatic – made me feel a lot better.

It’s incredible how bad people can make us feel with their condescending drive-by comments and “you don’t look sick” attitude, but it’s even worse (IMO) when it’s a medical professional who should know better treating someone like they’re not a person.

And of course, when my friend came to the same nurse with pink eye, the nurse was all like, “You poor thing!!! Lie down in here, I’ll call your parents, do you want a glass of water?” For PINK EYE! So obviously the problem wasn’t that the nurse was a generally uncaring person … she just didn’t care for me.

Back on the professor thing; sorry if this tangent has gone too far, but…

I agree completely with Amanda @72; the official channels should be used and are there for us. But Amanda also points out the flipside–discrimination. Personally, I went through the disability office only when going to my professors individual was a dead end. I was lucky enough to attend an undergrad school that was so small that this approach worked. The issue only reared its head in graduate school in terms of my PhD sequence, and not with my professors (well, there was one or two, but in my program, the paper grades trumped attendance). As I posted above, I had to fight so much to get the medical leave I needed, even with the documentation.

Official documentation is just that, though–official documentation that follows me, at the very least at my graduate school (where I TA-ed; where I taught, etc.). There is very little clear legal protection for bipolar disorder right now under the ADA (obviously this is different for other illnesses/disabilities), and this documentation from the past indicating I have such-and-such illness that can lead to absences and “performance” issues (in the eyes of someone less understanding) has been the mark of death at my current school, in terms of teaching contracts. The fact that I don’t miss classes when I teach them is ignored. That my external reviews are excellent–ignored.

That’s the harsh reality in my field: college professors face intense scrutiny right now, and if you think a student/parent has a problem with a prof giving someone a “D”, it’s even worse if they can find out (which they can) that that same prof is bipolar. The same goes for tenure and contracts–committees essentially don’t have to give any reason for denying tenure.

The issue of absences is a tough one, because each prof is going to have their own policy, and their own reasons. I know I’m in the minority with my “as long as you do the work, you don’t have to attend any classes” policy; I grade straight from the assignments. Class participation is 10% of the overall grade, and I seek out students who are not attending regularly and ask if there is a reason. If there is (and obviously at this point, since I’m asking, there’s no documentation), I request that they either provide documentation to the proper office, or have a chat with me. That seems to have filtered out the abuse issue. There will always be students who abuse the system in some way; they will get caught, if not in your class, then in a future class. In the end they are cheating themselves (cliche, but true), and profs can’t turn exclusively into policy police. We are there to teach.

In general, I’m not surprised by the “bad prof” stories, but I am incredibly relieved to actually read the words of others experiencing what I did. The unfortunate truth about professors is that we are never taught how to teach–in general we are thrown out there as lecturing machines without the interpersonal skills necessary for these situations. A 30 minute presentation from the office of student disabilities does not make up for the necessary education for profs.

I’m going to go against the grain of Amanda’s post here and suggest something, something I’ve done on my 10 years as a student: submit the paperwork with the absolute minimum amount of specificity–i.e. diagnosis–even then, if the office requires more specifics, work with your doctor to make it the most general diagnosis required. This ensures a certain amount of privacy and minimizes career paper trails. Then feel out your professors; usually within a week of class you have a good idea of those who are approachable, and those who aren’t about these issues (actually, the prof’s response to the documentation–which they receive before class begins, is a good gauge). Then seek out those profs that are approachable, in order to give the documentation from the office a face, a name, a personality–a reality.

And I’ll end this too-long post with something that shouldn’t be an issue with university special service offices, but is for me: it just feels like an invasion of my privacy; every time I have to shuffle up to that office, look through my file, and see my “documented disabilities”, I see both a service to help me, and a service that sets me apart–and not in a good way.

JJ – I hate having to “document” my disabilities for school … I know that it’s partially to help me (it is also to cover the school’s ass legally, I am sure). I went through hell to get special accomodations for my college dorm room. After I submitted my application for specialized housing, the school psychiatrist called up my mom and started harrassing her. I’m not exaggerating. She wanted to know why my mom had let my agoraphobia and other anxiety disorders get so out of control. My mom was like, what? Obviously, if I am attending college and doing well there (I get excellent grades and have made a lot of friends) my anxiety is under control!

Then the psychiatrist started making all these demands … she said she wouldn’t approve my specialized housing unless I started seeing my therapist weekly AND saw a therapist at school. Although I love my therapist, she’s very expensive and seeing her once every two weeks has been working for me since I was 15. Not to mention that this psychiatrist had never even met me or talked to me – how could she know what was right for me?

The school’s psychiatrist did NOT like the idea of someone with anxiety disorders coming to the college. She wanted my anxiety issues “resolved” before I would get my specialized housing. Um, I have had anxiety issues since I was four years old. My entire family has anxiety issues. They’re never going to be “resolved.” They can be treated and improve, but I’ll always have them, and I’m okay with that.

I complained to other people at the school, who told me that the college didn’t consider the student’s treatment in considering his/her request for specialized housing. In short, the psychiatrist had no right to tell me all that crap.

I don’t think that I would have been treated like I was if I had some sort of physical disability. If I was paralyzed from the waist down and asked for a dorm room on the ground floor, would the school’s doctor be calling me up telling my paralysis was “out of control” and that I couldn’t have my ground floor room until I “resolved” my problems with … I don’t know, stem cell treatment? The prospect of a paralyzed person being completely cured with stem cells before fall semester is about as likely as my anxiety issues being “resolved” in the same amount of time.

Sorry for the rant, but I really feel like I’m being witch-hunted sometimes. And what were the special accomodations I was asking for? I requested not to be in the school’s only off-campus dorm, which is too far for comfort for me. And I did get my request, thank God, after nearly 2 weeks of bullshit.

JJ:
I have a classification for a certain set of teachers/professors, of which I have encountered many — the petty control freaks.

Especially in the case of attendence and participation, but also in other areas (style rules, methods, etc.) they set a very high standard, and people who deviate from that standard — for reasons legitimate or il- — are marked down considerably.

I actually appreciate profs who put an emphasis on class participation (you can’t shut me up in a classroom!) and I understand the reasons for certain stylistic rules: this is the standard used in the profession you are aiming for, or it just teaches you how to adapt your work to fit an exacting standard. So it’s not so much the rules themselves.

But there are profs who use those sorts of rules as a weapon with which to punish any person who rubs them the wrong way. I have seen other students with perfectly legitimate reasons for absences, or (I was an art student) doing the project a “different” way, who the prof seems to take some sort of sadistic glee in “making an example” of, coming down much harder on them than would even be called for if the student was just being an ass about it hirself.

I have been forced to cut very small and intricate designs in construction paper with x-acto knives, which is HELL on my back, shoulders, and fingers, not to mention how it zonks out my concentration and makes me want to fall asleep on the spot while also feeling too weird to ever really get to sleep — when the project could have been done a number of different ways to the same effect. I have been docked for reasons of presentation that were 100% due to my disability, even after having discussed it with the prof (and I approached each professor at the beginning of the semester to make clear my limitations) and having DSS back me up.

Docked for dressing the wrong way or sitting the wrong way in my seat, for taking notes the way *I* am able to — etc. etc. There are profs who seem to take much pleasure in finding deficiency anywhere it can be found and dropping an atom bomb on the proverbial mole hill.

It’s so, so frustrating, because there are also simply AMAZING profs who were completely understanding — which actually motivated me to fit the standards as precisely as I could and to go above and beyond them when I could, because they were good teachers (in the most literal sense) and also good people who I didn’t want to disappoint. And then you get the sadistic standard-pushing profs who just make you want to drop all your classes and take that x-acto knife to yourself because you are such a bad student.

I’m not trying to prove a point or anything, just rambling on a subject you brought up. Going through college (and HS!) was hard enough without those teachers.

And I’ll note, while I can appreciate the motivation behind certain teachers who seem to construct their courses around the base idea of “Make them do something, even if it isn’t really teaching them anything, just to teach them how to make themselves busy” — with my disability in particular, spending my strength and energy on that busywork is actually very detrimental, because it’s time I could be spending doing something else that teaches me certain skills and techniques, or learn certain frameworks, or create something otherwise *useful.* ‘s one of those things where you understand why and it isn’t really wrong, but it’s just so wrong for you… and, guh.

Madeline, that two weeks of bullshit — I was trying to capture part of that in this post too. Even though you get things resolved eventually, just the sheer effort and energy you have to put into it, throwing your whole weight into the matter, when you COULD be, you know, doing something productive. Like, I don’t know, sleeping! Seriously. It’s that concept of resistance at every step, you have to constantly fight to get your most basic needs taken care of, it’s simply exhausting. And a lot of people don’t understand because hey, it got resolved, right? or well they shouldn’t have done that to you! Well, no, but they DID, and it HAS had a distinct cost in my life.

I was going to write a post here about “second shift for the sick” which is exactly this concept, but I think I’ve drained my posting energy for awhile with this series of posts :) It’s pretty much a full time job for us, and that’s rarely appreciated even by people who “get” the disability itself.

@Madeline, I honestly believe that some schools just really really don’t want people who aren’t wealthy and/or able attending. When I was appealing to stay in the university I attended despite my mishmash of grades, I got all sorts of questions (“If you are ‘chronically’ ill, how come you got an A in this course and failed this one?”) and no matter what my answer (“Because I have a friend who takes notes in that class, there are several private bathrooms in that building, it’s in the afternoon when I’m at my healthiest, and it’s closest to my dorm. And the prof is very understanding.”), the reply was generally a look of disgust or a snort of disbelief. Eventually I got a call, while in the hospital, that my petition was rejected and I should ‘stay with my parents until I got better.’ or if that wasn’t an option: “Surely the government has some sort of program to take care of people like you.”

So I should wait till my chronic, incurable disease gets better before I come back? Yea. I’ll get right on that. But not to worry, in the mean time I’ll just move back in with those middle-upper class nuclear parents of mine who totally have a place of permanent residence and can afford to take care of me rent free. Because naturally, if you are in post secondary education you are fabulously wealthy. And even if that’s not the case (unlikely!), the conservative gov’t* is going to be all over taking care of my ass and totally doesn’t automatically reject 50% of applicants.

I think all of these behaviours tie into the same thing: people want you ‘better’ so they don’t have to deal with it/you anymore. As has been stated here many times, the worst offenders can be family. I mean, my mum knows there is no cure, but seems to feel that mere passage of time should make me well solely because she wants me to be well. The gov’t keeps people on disability living below the poverty with no $$$ to say, leave the house or get a phone, because if you are at home all the time, no one has to see you/deal with you/spend more $$$ on you.

*part of that is actually the Liberal gov’t. I live in Ontario. ODSP is ridiculous though, there is documentation of them rejecting people with MS, and god help you if you have any mental or emotional hurdles to filling out the hodrillion forms they’ve compiled to weed out people who just don’t want/need it bad enough.

“Make them do something, even if it isn’t really teaching them anything, just to teach them how to make themselves busy”–ugh, that just kills me. That’s exactly counter to what teaching should be. I agree with your petty control freaks category, and there’s another one that I was talking around in a way: new profs (I still consider myself one) who are just leaning to deal with all the challenges of teaching a class, and are sincerely overwhelmed by these issues–and lack the training to understand them.

I teach a liberal arts subject, heavy on reading and paper writing; I do my very best to keep lectures fun, integrating group activities, creative approaches to the subject matter (puppets, humor, non-traditional resources), and the like into my classes. What I think is the key is to have my students leave, at the end of the semester, with a set of skills–whether they grasp the material is not as important as teaching them how the skills apply in life. And that goes right back to your initial post here: I have to adapt to them, but at the same time, not force upon them my preconceptions and ideas. It’s a give and take, and a difficult one at that.

But yes, profs like me are frequently ostracized–and criticized by senior faculty–because our methods lie outside the norm of “the student must fit into my pigeon-holed syllabus.” That just baffles me, but that’s what made me comment after reading your post. Not only did I experience similar things with my “invisible” illness, but I realized how much I had to learn, and how much I already did adapt to my students (and my special needs students, but again, I hate using that phrase–its just for clarification here).

Thank you. Thank you for this post. I have fibro; this entire series of posts… brain fog or not… articulates so much of my shared experience. The drug phobia, the well-meaning suggestions, and the corners one has to cut to be able to function.

“Oh god, I can’t believe she’s wearing CROCS…”

Merfle. Socialization took up all my spoons yesterday, so I’m not voicing my praise very clearly myself as I sit here and read blogs and hide from the world, but thank you.

WOW about this post, and WOW about the “spoon theory” too. I’d never seen that before, and yeah, it’s a pretty good definition for how things have always been for me because of Asperger’s. I didn’t even get a diagnosis until I was 44 despite seeing dozens of shrinks before, that’s how much ridiculous misinformation there is out there about it (they can’t love! they don’t care! they’re cold cold fishies who are obsessed with organization and order!), but when I did, it was like a series of explosions taking place in my head.

“So THAT’S why every time I put shampoo on my head, I feel like a 5-year-old doing it for the first time crying because there’s soap in her eyes. So THAT’S why I can’t even mop my floor without kicking the bucket over and having to clean it all up. So THAT’S why I perpetually feel in almost every social situation like at some point I’ve committed some hideous faux pas and nobody will tell me why and will just stop taking my phone calls and answering my emails. So THAT’S why I’m always dropping things, breaking things, staining things, ripping things. So THAT’S why I’m always losing buttons and jamming zippers and running stockings and not being able to find matching socks when I’m trying to get dressed for work and having to try on seven different outfits before I find one that’s not hosed in some way and that’s why I keep missing my train by two minutes and being an hour late. So THAT’S why I can’t stop stimming myself even when I keep telling myself not to over and over again. So THAT’S why I keep getting written up because can’t get through a work day without staring out a window or into space and going to the bathroom over and over again just to have somewhere to go, so I don’t have a meltdown. So THAT’S why everything itches, everything pinches, everything makes me sleepy or nauseated or jumpy. So THAT’S why there’s no sitting position I can stay comfortable in, and why I have to wear long dresses because I can’t stop twisting myself into positions that expose the whole world to my cervix. So THAT’S why. So THAT’S why.”

And now I’m just unbelievably pissed that I WASTED DECADES OF MY LIFE NOT KNOWING WHAT THIS WAS. And so part of me wishes that I had MORE people being busybodies and butting in and telling me I should be evaluated specifically for this (as opposed to telling me, “You know, you have rocks in your head and need to see a shrink,” like I hadn’t seen a bajillion of them since I was 14 and been on a squillion different meds, all of which “helped” but not enough). But you know what? Someone did. About five years before I was officially diagnosed, a friend (who had aspie tendencies herself) suggested I might be aspie, and I read about it and went, “Nah, I’m not a routine person, I like affection, that’s not me.” I focused on the few “nos” I checked off, not the extremity-length list of “yeses” I might have gotten to had I not freaked and refused to continue. (When, years later, I took an are-you-on-the-spectrum quiz online, I got a 41 out of 50; 32 and higher meant “yes.”)

And now that I do have the diagnosis, I’m very, very reluctant to tell people I don’t know very well about it in real life (as opposed to blathering about it pseudonymously online). I really don’t want the whole list of “have you tried X?” being thrown in my face. Being aspie, of course, just means it’s that much harder for me to resist giving people who do that stuff what-for — from the jokey “why do I have to ‘try’ anything, don’t you WANT to Keep Portland Weird?” to the more confrontative “why does everyone want to Frankenstein us and give us NT brains?”, and it doesn’t much matter whether this person is someone whose ass I’m technically “supposed” to be kissing or not, it’s hard not to blurt it out anyway! But most NT people don’t immediately recognize aspie behavior as such, they just go, “Yikes, how bizarre,” so if I don’t tell them, they have no chance of ever getting a handle on this stuff.

maybe you should really try eating an orange while you spin around five times to the left while holding the yoga pigeon posture and chanting co-opted OMs then throw salt over your right shoulder, take some vitamins, plant some echinacea even though it’s been proven to have no effect on the immune system or mood or bone and joint damage but hey it will reduce your carbon footprint, then burn an effigy of your spine because we all know it’s not that bad anyway and you’re probably making it up’ speaks to.

was the greatest thing i have ever read.

my mother, who is being much better since i emailed her the spoon theory (thank you amanda) suggested today that maybe she should learn reiki (sp?) so she can heal me. i was like “stop trying to fix me and help me fix society so i can fit in it, ok!”

amandaw, your PSAs are about “Have you tried X?” queries; do you have any thoughts on “Oh, you’re using Y? Didn’t you know that’s been debunked?” I meet a lot of people of all able-ness who waste their money on treatments which range from useless-but-innocuous to useless-and-downright-dangerous. I feel compelled to tell them that their chosen treatment is useless b/c I feel that annoying them (and they are always annoyed) is a lessor wrong compared to allowing them to continue to be misled by a possibly well-meaning but definitely fraudulent practitioner. Then again, it’s their money and their health, and they are entitled to throw both away.

That has been a huge point of frustration for me over the years. I still seethe inside for every exposure, no matter how slight, to this stuff.

What I’ve learned is:

* The medical complex is corrupt and harmful in many ways. A lot of people no longer trust conventional medicine because it has been used against them in malicious ways, or even because they have been seeking diagnosis and treatment for years upon years and all they’ve gotten is a lot of inept, ineffective practitioners and a smattering of true assholes, spending a significant amount of time, money, travel, and effort to figure out what’s wrong and to be turned away at every step. It’s easy to see how people can quickly become disillusioned with mainstream medicine. And really, that’s their right — because they have been treated poorly, and possibly none of the conventional medical treatments work on them anyway.

* Holistic practitioners operate in a much, much more warm and accepting environment. They *take you seriously* — I don’t think it’s possible to overstate exactly how huge that is for pw(i)d. They listen, and they understand, and they treat you with care and respect. They have coherent theories about your condition, regardless of whether they actually hold up under scientific scrutiny. And they are also maligned by a lot of conventional medicine — which, for those people who have been neglected or mistreated, makes them identify much more strongly with the movement.

* The placebo effect can be very strong. Especially when you are as invested in the treatment, the practitioner and the movement as many people become. This is the first time you have been taken seriously by any medical professional — you reeeeeally want this treatment to pan out, because if it doesn’t, well, where does that leave you?

* And, well, does it matter if it’s the placebo effect or not? Something is helping them to feel better and get things done. They may never have truly had that before. Who are we to take that away?

Trust me, I have very strong feelings on the field of alternative medicine — I consider (most of it) predatory, exploitative, destructive… I’m not a fan, to say the least. But when it comes to the patients, I tend to have far more sympathy. They are just trying to navigate a world that has set obstacles everywhere they turn, and trying to find something that works in their life.

Now, I felt perfectly legit in asking my mother, when the whole coral calcium thing first hit, “Mom, you’ve done this before, and last time it didn’t work, and the time before that it didn’t work, and…” I know her history and I know her personality, and most of all I know her finances really don’t leave room for her to be chasing every miracle cure.

And really, I think, that’s the only time I’d feel comfortable pushing the matter — when I know the person well, and when they stand to lose a lot from the treatment, financially or healthwise or emotionally, etc. But if you don’t know the person well, and/or it’s honestly going to be frivolous at worst, and not have much of a true cost: leave things be. I can understand a gentle criticism: actually x doesn’t work because… rooted in scientific reality. But, like I said, don’t push.

In the end, it’s their life. You are not them and they are not you; it makes a lot of sense in your life not to pursue these quack treatments, but it might make sense for them, whether it works out in the end or not.

There is not some cosmic tally board, where people pursuing quackery ends up docking points for all of us. There are only individual lives, and you can’t impose your frame of thinking on anyone else. You can make your opinions known, and if people find them interesting, appealing, etc. they may take a turn. But whether it’s altmed, or a friend in an abusive relationship, or religion — pushing anything too hard can end up being counterproductive, if your end goal really is their well-being.

Thank you for writing this. I have fibromyalgia too. I usually don’t even mention it by name when discussing my chronic pain because I can almost sense people rolling their eyes as they read the word. That seems to be the general attitude I’ve experienced over the years. Like you said, how do you we prove our pain to other people?

I can also relate to your feelings about “drive-by advice”. It’s so frustrating when people assume that I haven’t tried every option available to me; like I’m just not trying hard enough to feel better. Yeah, because I enjoy chronic pain so much, I just can’t let it go. Whatever…

Granted, some days are better than others, but this isn’t one of the better days, so thats all I can muster for now.

This was an amazing post. Though I haven’t suffered anything approaching to your experiences so much of this rang so true to how I’ve felt and what I have wanted to be able to tell the people around me. But more importantly, it’s made me so aware of how I’ve been unhelpful to other people that I’m supposed to love. What you write about the pressure and damage done by other people’s expectations and demands makes me feel ashamed of myself, and I hope will prompt me to be better. Thank you.

Look, I know that what I’m about to write will probably piss some people off, but this is my life, and so I’m not trivializing.

I am an able-bodied white male, about as privileged as it gets. Got into Harvard early action. And here I am, in a dark room, at the end of a day spent cruising the internet killing time. And that is pretty much the story of my life – I cannot hold a real job. My wife has pretty much lost respect for me.

What does this have to do with this thread? Well, I am probably about as functional as many disabled people. And though my problem is not fibromyalgia but just agressive, nihilistic procrastination, it is not something I can just disappear with any magic wands, not something I have found any good cures for. I have honestly tried, and have found some things that help (you want to hear the self-boosting version of my life story, it is pretty unrecognizably different). But I am still here now.

I’m not looking for pity – I know that this thread is the last place on earth for someone like me to find it. What I am looking for is strength. My problem is is clearly simpler than what many of you have overcome. Though not imaginary, and not a million or a hundred times simpler.

So I guess the question I have in common with this thread is: what gives you strength when you (mostly) can’t discuss your problem with people? (I can’t do it because there’s not even the words – the sentence “I’m just lazy” barely even makes sense without the “just”. But if anyone is inspired to respond that I’m wrong, that there are ways for me to talk about this stuff and get support, then that is welcome too.)

“lost,” I emailed this to you in case you don’t find your way back here, but I also wanted to post it here, because I know there are many more readers than commenters, and some of those may see themselves in your comments. So…

You do not have an official diagnosis, but a severe lack of motivation, loss of interest, etc. can be signs of depression. You don’t have to feel “sad” to have depression or even feel those feelings of worthlessness/guilt/self-loathing/etc. (though those can be a part of it). Depression manifests differently in different people, so one depressive person may be sobbing every day and beating themselves up over and over for every action they take, while another depressive person may find himself unable to get up off the couch after a time on it, unable to push himself to get up in the morning, and to get ready for work, and etc. It can be like there is a thirty-ton lead weight chained to your torso, only psychologically — if that makes sense!

And depression isn’t the only thing; there are a number of conditions both psychological and physical that could be the cause, or could “just” be contributing, or might exist completely outside of this as well.

Science has done a lot for us, but sometimes we forget that there is a vast, vast world of things that we don’t know, hell, don’t even know exist. What do you think fibromyalgia patients felt before the medical community put a name to it? They probably thought that there was nothing wrong with them medically, that they were just bad, lazy, complaining people, and that they should be ashamed of themselves for it, because there was no good reason for them to do what they were doing. They thought their problem lay in their behavior, as opposed to simply the conflict between how their body worked and how bodies are expected to work societally.

And you know what, it’s very possible there aren’t any conditions there. I don’t know. We don’t really know anything, ultimately. I didn’t study philosophy so I don’t know which precise philosophical discipline that appeals to, but it’s true, dammit.

But you might reflect for a little while (as though you haven’t been already!) and see if you can identify any and all symptoms that seem not quite right. And once you’ve identified a handful of them, you might consider talking with a good doctor, and seeing what s/he thinks of the matter. And whether there is anything medically “there” or not, you might consider finding a good counselor and sitting down to talk for a little while. Counseling does not mean you are deficient, or “crazy,” or any of the other stigma attached to it. You can see a counselor because you have depression, or a broken leg, or cancer, or because you recently lost a friend, or because you are having a hard time adjusting to a new job or place to live, or really just because something is happening that you don’t like and you want stable footing so you can properly process it all.

Personally, I find that externalizing all of the words and ideas and emotions (all which are separate phenomena in the brain) helps me figure everything out much better. That means writing on a blog, or writing in a private journal, or writing to a friend, or talking to that friend, or talking with a therapist, or talking to my cat.
Everyone has a different learning style (which is what this comes down to) and it also might help to try a few things out so you can pinpoint what works best for you. Procure some counseling, start a private livejournal, plan a sit-down talk with your wife once a week about The State Of Things, or even just The State Of Me. Maybe you make better progress through paint, or through reading someone else’s work. Find those things that help and throw your weight into them.

It can take some time and effort, the latter which you have some trouble summoning. But do try to budget some on the side, to seek out a good doctor and/or therapist, and to get there regularly and make some constructive progress. Toward what isn’t really relevant right now (tho’ I can tell you right now “toward normal” is a dead end) it just matters that you try. Hopefully the people who should make up your support system will come through for you. And I certainly hope you are able to make your way toward a life that works for you and that you can work with — really, when you get down to it, that’s the best damn thing in the world to have.

If I were a troll, I’d jump on that. You just gave me a list of suggestions. It is a helpful one, to be sure, and honestly I do appreciate it, and in some degree it directly answers my question. And you did it in a sensitive fashion. But still – based on a few sentences, you suggest a diagnosis and a course of action. If you don’t want to seem like a hypocrite, you should be more up-front about when you think that kind of thing is OK. Instead of “Stranger, don’t give me advice”, I think the main message is more like “Stranger, if you give me advice in an insensitive way, I have every right to dismiss it quickly.”

As to my specific situation: certain things you say are helpful, others misconstrue my situation. If I were to respond in full here, I would truly be hijacking this thread. I will respond by email.

I wanted to respond to your comment yesterday soon after your post but my mind has, unfortunately, been out to lunch for the last couple days.

You did ask for thoughts and advice, which is what I was trying to offer. But you are right that I then turned around and did exactly what I had been criticizing. I am sorry for that.

My official stance re these things is, well, with the societal context what it is, it is impossible to ever do something that is not problematic in some way or another. Which is why I stress that we do not judge based on individual actions. It is not about who is racist or sexist or ableist or otherwise. It is not about a person’s own character or reputation. It is about what the language, attitudes, behavior etc. do, both in a direct way and indirect (how they shape how we think and approach the issue). Which is why I tried to emphasize in past threads that doing whatever does not make you a Bad Person.

And there was a problem with my posts in being a little too black/white, drawing lines where hard lines can be bad and there should be more flexibility. I didn’t get a chance to really address that honestly and thoroughly. Part of it was my problem with wording, which I have discussed in many places, but another part of it was, honestly, leftover bitterness from the encounters I have had myself.

I was trying to address, specifically, the drive-by careless comments with no regard for the person hirself and all that is involved in that. I wasn’t specific, tho’, which ended up causing some problems in the ensuing discussion.

I did get your email and I will give it a good read-over within the next couple days, all permitting. Thank you for your graciousness, and my best wishes always.

What do you think fibromyalgia patients felt before the medical community put a name to it? They probably thought that there was nothing wrong with them medically, that they were just bad, lazy, complaining people, and that they should be ashamed of themselves for it, because there was no good reason for them to do what they were doing. They thought their problem lay in their behavior, as opposed to simply the conflict between how their body worked and how bodies are expected to work societally.

i love you. i love you so much i would totally buy you candy if we were hanging out. until i read posts on these threads, i had never heard of asperger’s syndrome. it was fucking mind blowing to read about it and go “hey, you, get outta my head/body!!!” and all the sudden all the shit in my life added up and made complete sense, why i struggle keeping friends, why people get mad at me when i dont understand their jokes, just on and on and on. tomorrow morning i go to the doctor to begin my quest for an official diagnosis. but, before i had heard of aspergers, before i had even seen my already diagnosed mental health issues (anxiety/agoraphobia, depression, ptsd, pmdd) described as disabilities, i just thought that i had somehow failed at life.

i dont actually kno how many times in my life i have responded to my latest setback with “i suck at life” and i spent so mucht time feeling like i was just lazy or self indulgent, like the fact that the thought of leaving the house and being around people alot of the time makes me cry, i just figured everyone else in the world felt that way, but were tougher than me and dealt with it. i thought of myself as a big sissy crybaby.

these conversations have helped me sooooooo much. identifying myself as disabled has helped so much. sure, now there are new fights to deal with, like getting evaluated for aspergers, and applying for disability benefits, and making my mom understand that i dont use disabled as a descriptor in a negative way, that disabled isnt a dirty word, that it is a useful descriptor, just like how i like having to word brown so i can answer people if they ask what color my eyes are, or the word short if i describe my height. being able to put a word to define an experience is reeally the best way for me to understand myself and to be ok with myself.

No need to apologize to me. I was asking for random suggestions, actually, and am happy for them (in email, ’cause it’s pretty off-topic here, except for my specific question of how to keep up strength when it is hard to find understanding support). Just pointing out that it is actually not productive to ask people to totally self-censor. Impressionable kids might read your original post and just get wa-ay too self-conscious the next time someone tells them about a diagnosis (I remember what it was like to be a feminist college boy, and a nerdy one who needs explicit rules – it was painful sometimes).

The point is not to shut up, the point is to have some basic awareness that the person you are talking to has knowledge you don’t about what works for them. And that point is totally compatible with the rest of your rant – rants are good, and this one obviously touched a chord.

I didn’t realise when first reading what illness the author had, but I thought, she’s telling my story. I almost cried to know somebody understood my experience and then I discovered that she also had fibromyalgia. I still often wonder if it is in my head, a result of all those years of doctors telling me the results showed “nothing.” It was only when I went to another practice that specialises in wellness and longevity who started regular blood tests and found thyroid deficiencies, no cortisols, and the list goes on. The problem is such medical treatment testing and subsequent treatments are expensive, as the Australian health care system considers them preventative not curative, and so doesn’t cover the costs. Under this regime I have made significant gains, but it seems more like holding the fort than winning the battle at times. So this post was a godsend.